We don’t always know what words to use when talking about disabilities, and this keeps us from having important conversations and making progress.

We all have disabilities. Those of us who fall into the category of “disabled” are people whose conditions are considered limiting enough to need accommodations in order to be self-sufficient and live independently. That said, the disabling effect of conditions can be dependent on context.

Disability becomes a handicap only when we encounter barriers.
—George Covington and Bruce Hannah, Access by Design

Design can make a condition disabling—or irrelevant. And technology has a huge role to play in minimizing barriers. We must be able to talk about disabilities without letting awkwardness about language get in the way.

Minimizing language barriers

We all want to be considered for who we are, not only our age, gender, clothes, or hair color. A disability is one attribute of many. It does not define a person.

People-first language is a concept that emphasizes the person first—“people with disabilities” versus “disabled people,” “person who uses a wheelchair” versus “wheelchair-bound.” It also minimizes negative connotations of disability—“disabled” versus “handicapped,” a person “with muscular dystrophy” versus “afflicted by muscular dystrophy.” Using a people-first approach when talking about disabilities may help alleviate concern about saying the wrong words.

The people-first approach is based on a conceptual framework of placing the actor (“person”) before the attribute (“who is blind”). There are other schools of thought, including inclusive language in the UK.

The table below is adapted from the helpful Resource Guide for Teaching Students with Disabilities (PDF) from Cornell University. The purpose of the table is to demonstrate the difference between affirmative and negative phrases, and to show a “people-first” framework for talking about disabilities.

Words matter and people matter. But let’s not let hesitancy about using the right words keep us from talking about how to minimize disability through technology and design.

Affirmative phrases

Negative phrases

Disability, disabled

Defect, crippled, handicapped, invalid

Non-disabled, person who does not have a disability

Normal, able-bodied

Person who is blind, person who is visually impaired, person with low vision

The blind

Person who is deaf, person who is hearing impaired, person who is hard of hearing, person who has hearing loss

Where did you go
when I had my back turned
and my hands in the sink,
washing the dishes we dirtied
on this evening of excess,
and you said my soup made your groin
ache and your chin tremble, and
I leaned forward, laughing,
and put my hand on your arm,
then I stood to collect the plates,
stacking them up my arm like
a row of buttons, and you remained
seated until halfway through washing the pile
of dishes, I was alone again, and my
gut turned cold and mean and began to
eat itself for spite because I realized
I had just dined on soup from a can
and you were never there at all.

In the past years I’ve often found myself in the role of change agent—someone responsible for advancing new ways of doing things. It’s the most challenging role I’ve ever held, and I’ve reflected quite a bit on what works and what doesn’t. More recently I’ve been in the role of assisting other change agents. I have had to move beyond reflection to being able to articulate beliefs, approaches, and methods.

The expression “herding cats” had to have been coined by a change agent. It’s hard work, advancing a new program or belief—particularly one that is not widely valued within the community. Getting a group of freethinking individuals headed in the same direction can require coaxing, cajoling, and treats.

Not everyone is inclined to cat herding. I’m more of a dog person, myself, and believe effective change management needs more of a pack approach, with clearly defined roles and strong leadership.

Here I outline some key factors that influence success in leading and governing change to integrate accessibility into culture and practice within an organization.

Define and observe roles and responsibilities

For the Harvard Web Publishing Initiative we started each new project with a project charter. One of the key components of the charter was a section on project governance, where we identified roles. To create the governance matrix we asked questions like, Who has the authority to initiate the project? Who has the authority to approve the design? Who is responsible for defining the strategic direction? Who is responsible for the quality of the content? Who is accountable for misinformation? We required that they identify one person in answer to each question.

Projects worked best when these three attributes came together—when the person responsible for taking action also had the authority to make decisions and was accountable for the result—for example, when the person responsible for developing content also had authority to make decisions about content strategy and was accountable for misinformation. Projects that were more difficult to bring to fruition were those where the roles were divided among team members, or where the understanding of defined roles was not clear, or the roles were not universally accepted and heeded. All the projects in the initiative were successful in the end, but in some cases, progress was more challenging.

For accessibility to be successfully integrated into an organization, everyone involved in making decisions that affect accessibility needs to understand their role and responsibilities, and appreciate how their decisions affect the ability of others in meeting their responsibilities. Starting from a governance structure that everyone understands—and believes in—is a key step in advancing toward a practice of accessibility.

Confer authority along with responsibility

At The Paciello Group, or TPG, we help organizations achieve and sustain accessibility in their digital product and service offerings. I would characterize many of these efforts as “disruptive” in the sense that accessibility is not always universally valued, within the organization or in the market it serves.

That said, in many cases accessibility is a requirement, and there is a growing understanding within product development that, while retrofitting for accessibility may meet obligations, it is costly and the result is not satisfying for anyone—the equivalent of putting a wooden ramp on the side of a building to provide access. Instead of waiting until QA to consider accessibility, product development teams are taking a more mature approach to accessibility, and are looking to increase their knowledge and skills, and embed accessibility into their processes from the start.

Because this shift in approach requires organizational change, one person typically leads the activity. The role is often characterized as an “accessibility evangelist”—a person responsible for organizing the effort, raising awareness, providing training and resources, reviewing products and identifying accessibility issues for repair. This is usually not a senior role within the organization. It is often someone in an existing role within the organization who has an interest in supporting people with disabilities.

I remember one of my good friends, Professor Mark Williams, commenting to me at some point when I was at Dartmouth, “So you have been given lots of responsibility and no authority.” I don’t recall the specific project he was referencing. Many of my projects relied on my ability to persuade people of the validity of taking a certain path, and the strength of the commitment of the community. But his observation helped me understand at least one reason why the work was so difficult.

Now that I am advising organizations on how to advance accessibility, I believe one key is to move away from roles that have responsibility but no authority, and that rely on persuasion and good will to be successful. Accessibility means changing values and culture. To successfully shepherd a community through fundamental changes, we need to give the people with responsibility for making things happen the authority to make decisions.

Assign accountability for accessibility

With authority and responsibility come accountability. Accessibility in practice requires significant change to processes and skillsets. It also involves making accessibility a “non-negotiable” requirement, on par with security and privacy. Those responsible for implementing accessibility in practice must also be given the authority to make decisions that influence its success, and must be held accountable when products are released with features that do not comply with accessibility standards, and are found to be inaccessible.

Moving from assigning an “accessibility evangelist” to making someone accountable for inaccessible products is quite a leap. Very few organizations have raised their accessibility program to such a stature. A search for “Chief Accessibility Officer” on LinkedIn returned seven (7) results. But organizations that are truly committed to building accessible products would be wise to make the leap.

Because what’s the likelihood of getting a herd of cats to go in the same direction? By identifying a person who can lead the initiative— someone who has the authority to define roles and responsibilities and who is responsible for ensuring accessibility obligations are met—organizations can take long strides verses short, incremental steps toward building a culture and practice that supports accessibility.

In the meantime, back in the real world…

As noted, not many organizations have made accessibility a “chief” concern. I think we will see more of this level of commitment in the coming years. In my opinion we should be appointing Chief Experience Officers with accountability for accessibility as part of providing a quality user experience. But that’s a topic for another day.

In the meantime, how do we make organizational progress toward building capacity and support for accessibility, without leadership and governance?

BJ Fogg has a “flip book” that I love called Designing for Lasting Change. It’s a great source of insight and inspiration, confirming the value of “baby steps” and providing encouragement to hold fast in advocating for radical change. I highly recommend giving it a read, and keeping it close at hand.

Here are some thoughts for baby steps:

Look for projects and initiatives where accessibility can hitch a ride, such as quality initiatives, responsive web design, or website or app redesigns. If people are looking at some aspect of a product or practice with an eye toward improvement, accessibility fits in perfectly, as an improvement that benefits people with disabilities—and everyone else.

Find places where accessibility fits into existing resources. Do you have a style guide? Weave accessibility best practices in with other styles and conventions. How about training materials? Integrate accessibility guidance as just another competency.

If you are involved in any way in hiring decisions, push to make accessibility part of position responsibilities, and evaluate candidates on their accessibility knowledge and experience.

As BJ Fogg notes, “Don’t underestimate the concept of small changes.” Incremental steps put people on the path to bigger changes. Making accessibility easy and part of existing practice will build momentum and lead to more significant changes.

It’s been a year since I made the leap from higher education to a job in accessibility at The Paciello Group, or TPG as we are more commonly known. Here in my anniversary post I reflect on some of the good stuff that’s happened this past year.

We included interviews in the book, which we really enjoyed doing—chatting with people in the accessibility community about topics near and dear. We wanted to keep doing that so we launched A Podcast for Everyone, with help from Rosenfeld Media, UIE, TPG, and O’Reilly. We plan to keep cranking out episodes every two weeks, indefinitely.

My work at TPG has been intense—in a good way. I started out doing technical reviews of websites, web applications, mobile sites and apps, desktop apps, even telephone services. With my TPG colleagues—the best accessibility mentors in the world (and who are, incidentally, located all over the world)—readily available in my Skype window, I learned a ton about the technical underpinnings of accessibility in digital products and services. I continue to learn new things from my colleagues every day. Today I learned about taps, swipes, and other touch events from Patrick Lauke.

The other focus of my work at TPG has been on building out a practice of Accessible User Experience. TPG has been doing user research activities for a long time, and when I came on board I was tasked with formalizing and building out those services. Fortunately, TPG hired David Sloan around the same time as they hired me. Dave worked for many years as a researcher, teacher, and consultant at the University of Dundee and is an expert the impact of accessibility on user experience. We’ve been reviewing mockups, wireframes, and prototypes to advise on accessibility implications at the design phase. We had several user research engagements, doing stakeholder interviews and usability studies. We have a series of Accessible User Experience training webinars that teach ways to bring accessibility into UX activities. We had a really interesting and challenging engagement creating a roadmap for integrating accessibility into the culture of a large multinational.

Overall, it’s a great time to be working in accessibility with a focus on user experience. Companies are becoming more aware that accessibility cannot be addressed after-the-fact and result in an acceptable outcome for anyone. The costs are high, for producer and consumer. I look forward to continuing work with my TPG colleagues and the accessibility and user experience communities to bring accessibility into user experience, so that products and services are accessible and enjoyable for everyone.

I started learning about web accessibility in the early 2000s when I was asked to speak on the topic at a conference. Since that time I have had opportunities to develop my knowledge and expertise, but always as an adjunct to my day job. Web accessibility became a passion that I would weave into my other job responsibilities, and write and present about on my own time.

And I’ve had some really great day jobs, all in higher education, and all having something to do with designing and coding interaction. In recent years I’ve been less of a doer and more of a leader and strategist. I’ve had a great run in higher ed, with wonderful colleagues and countless opportunities to learn and grow. I am very grateful.

Recently I had the pleasure of speaking at the HighEdWeb New England regional conference. What a great bunch of people! I really enjoyed the energy and positivity of the sessions and the side conversations. This is a group undaunted by the challenge of bring order, quality, and new ideas to the fairly conservative yet chaotic medium of college and university websites.

Bringing order to chaos has been my main focus for the last five or so years as a web strategist, first at Dartmouth College and more recently at Harvard University. I spoke about my work on the Harvard Web Publishing Initiative at HighEdWebNE, and it was a great opportunity for me to get my head around some of the more innovative aspects of the project, and some of the challenges.

I started on HWPI in June of last year, as Web Strategy Project Lead. Personally, I love a challenge, and I can’t think of many things more challenging than setting up a centralized governance model, suite of services, and software platform for web publishing in an environment as large and decentralized as Harvard University. The project is ambitious and forward-looking, with strong backing from institutional leadership.

Our approach to HWPI has been enterprising on many fronts:

Learning by doing. Rather than engage in an extended discovery phase to learn the requirements for the project, we started with a pilot phase. We redesigned the websites of 10 academic and administrative departments, identifying the requirements for the platform and best practices for service delivery, and setting standards for user experience and design.

Guided by strategy. To avoid “lift and drop” redesigns we started each project with a project charter, asking departments to step back and define goals, target audience, and success metrics. We also identified and assigned ongoing departmental resources, particularly for content.

Focus on user experience. A consistent user interface improves user experience because visitors can learn the interface once, and then apply what they know to other Harvard sites. We designed common navigation and wayfinding systems for academic and administrative departments.

Commitment to quality. HWPI is about quality, and not just on the surface. We hired a digital content strategist to help departments craft their content to best accomplish their goals.

Software for higher ed. HWPI is using OpenScholar, a Harvard built Drupal-based open source software platform designed to help faculty communicate about scholarly endeavors. With origins in higher education and developers on the HWPI team, OpenScholar is expanding to include functionality needed for university communications.

Responsive and accessible. Early on we realized that a great visual design that works well in different contexts and devices would be an enticement to use the platform. We partnered with Happy Cog to develop accessible and responsive templates for the platform.

By the end of March we were through the pilot phase, successfully launching the 10 pilot sites. But it wasn’t always an easy process, for the team or the clients.

An accidental innovator

When I started work on HWPI I thought it was interesting and challenging, but innovative? Not really. I had been working many years at Dartmouth on a similar service and platform. I expected this project to be much the same, only bigger!

As time passed I realized the project was not only innovative but also disruptive because it asks people to change their values. Rather than valuing customization it asks customers to value other factors, like a shared platform with central support, a common look-and-feel, structured content, and opportunities for content aggregation and sharing. I wish I had recognized the disruptive nature of the project earlier because I would have sought ways to adapt our process.

In my HighEdWebNE presentation I shared several books that are important for people involved in innovation projects: The Innovator’s Dilemma, to help recognize a disruptive innovation project, Diffusion of Innovations, to learn how to get innovations adopted, and Change by Design, for a “design thinking” methodology to support innovation projects.

Innovation and disruption may seem all in a day’s work for people working in technology. We don’t generally wake up in the morning and think, “Well, off to innovate!” But the customers we rely on—to adopt and enjoy the fruits of our labors—have a very different perspective. To them, we are asking a lot. We are asking them to change their values.

If you find yourself working on a product that your customers think of as new, first of all, recognize the project as a disruptive innovation. Then, form a small team to work exclusively on the project, surround the team with customers who want and value the features and capabilities of the product, and use an iterative approach of brainstorming, designing, and prototyping to produce a successful outcome.